Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Sunday, November 16, 2008

Do I Have A Great Life, or What?

I’m feeling lucky. Lucky in my family, friends, support system and all the great people I know. Lucky that my constitution is as strong as it is. Lucky that science and medicine have advanced to the place that the surgery I had was even possible. Lucky that the tumor was benign, in an accessible place, and not entangled with my brain. Lucky that there is superb neurosurgeon in town these days. Lucky that I’ve been largely able to resume my regular life—so long as I get regular naps—without significant detectable differences from “before.” Lucky, most of all, that my life is populated by so many kind, smart, and interesting people.

Kearney and I have been struggling to synthesize and summarize what we’ve learned from this experience. We started this adventure on September 4, when the tumor was first diagnosed. As of mid-November, we haven’t been able to boil down or organize our thoughts very well, but here’s our starting list of lessons:

• Anytime any of “ours” are in the hospital, another of us should be there around the clock. No exceptions. (See post of September 25, at http://ckgunsalus.blogspot.com/2008/09/review-of-our-hospital-experience.html)

• In any major adventure like this, information must be paced, due to overload; the magnitude of the situation means that information can only be absorbed in small bites.

We’re ruminating about what kind of overview would be useful explaining the stages of brain tumor surgery and its aftermath. It seems to us that both chronologically-based and topically-based information would be valuable. Right now, for example, I'd like to know what's normal/not re incision healing. Is it to be expected that some parts are almost totally healed and others are still pink and sensitive? Topically-directed information chunks, like one on how the surgery is actually done, one on seizure dangers and likelihood, one on what to expect in each stage, one on meds and resources, etc., would have been helpful.

• On that last point, SURELY there’s a computer program out there somewhere where you can input how often you need to take a whole set of medications, including what you can take with food and with each other or not, and that will spit out possible schedules that optimize the whole mess? If not, something like this needs to be developed.

• This may sound self-evident, except that it wasn’t to me: the importance of learning to read your own signals and factor that into timing, rest, etc. Maybe one can only learn this the hard way, for oneself, through trial and error, but more details about the kinds of signals to watch for might have helped me learn this earlier and better.

• That we're from pretty serious hardy pioneer stock and shouldn’t take it for granted.

• The importance of various kinds of support offered as well as, for us, how to offer things that people can choose among without feeling like defectoids because they're taking help. Learning to take help gracefully has been a huge lesson from all of this, especially for me, who would always much rather offer help than receive it.

• The importance of sharing information and the experience both to validate the experience and to avoid feelings of isolation. We can only write about our encounters, but we reckon that we represent a category of people to whom our experiences are generalizable

• In the health system, the importance of how staff interact with patients/families and actions that were especially useful for eliciting the kind of care that was best suited to us.

• Entering medical world with a serious matter is profoundly isolating and so much of it happens "to" you that having some method, any constructive method, for taking some control back is helpful. Ours happened to be our counting exercise. There wasn't anything magic about what we did, except that it let us feel that we were still ourselves, and still had some power/control in an otherwise completely overwhelming process.

We don’t have any global observations yet, as we surmise that we’re still close enough to it that seeing the big picture is beyond our current perceptive ability. Kearney will add some additional thoughts after she finishes lunch.

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Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.